This is an apology to Rosemary Norwood and those within the autism community that I’ve offended. But because such an apology would be meaningless in 140 characters, I’ve moved from Twitter to my blog. What follows might also stand as a cautionary tale to others new to Twitter conversations.
My problems started when I watched an ABC AusAttitude documentary on autism. The show featured Rosalind and her artistic son, Claude. In addition to being a mum, Rosalind is also a neurologist and doctor who has spent her professional career engaged in scientific research about her son’s condition. The show told something of Claude’s condition and family life, and also featured Rosalind explaining some of her research and complex neurological challenge of finding a “cure.”
While watching I was committing the cardinal sin of digital multitasking – my phone was open on my lap, and I made the Twitter comment:
Stunningly interesting @Ausattitude on autism. Love the relationship between annabel and Claude, autistic brother.
I thought nothing more of this. After all, I have virtually no Twitter followers, and I can’t think of a single instance when any of my tweets have received a response. I was thus surprised to receive the following replies from @RosemaryNorwood :
the only good thing about the episode. Annabelle was the only person who seemed to unreservedly value Claude.
There followed a series of Rosemary’s observations about the show, including the following:
@scliffo @Ausattitude Think she got the idea that he has no internal life and no ability to feel family links or emotions from thin air?
@scliffo @Ausattitude Annabelle also unfortunately repeated “We think he might just see us as tools, to get what he wants”.
@scliffo @Ausattitude “I’m the doctor telling this family you’ve got this problem.” We’re not problems, either.
@scliffo @Ausattitude “There’s lots wrong with the hardware and software of autistics.” We’re different not wrong
Rosemary’s concern was that Claude was being spoken about, and treated as a medical problem rather than valued as a unique person. A much wiser person than me would have kept quiet at this point. After all, what do I know about autism. But I ignored my own rule (which is that you should always sleep before hitting send on contentious emails – or tweets), and went to the defence of Rosalind
@RosemaryNorwood seems a harsh and unfair judgement on her parents.
@RosemaryNorwood she was a medical research, so gave technical info. But she clearly displayed her love.
Of course, I would stand behind the truth of the statements, but repent tweeting them. Further on in the back and forward discussion, Rosemary criticised the program for showing a parent (not Rosalind this time) dragging a child across the floor. I flippantly responded “you’ve never been a parent, then” – on the basis that most parents would be guilty of dragging children at one time or another. Geez, this may be true, but what sort of an idiot says it? In all of this discussion, Rosemary wasn’t really disputing Rosalind’s love for Claude, but the ways in which she felt the documentary medicalised autism as a problem to be fixed, rather than showing Claude to be a uniquely beautiful and interesting person. Her concern was also that the program failed to show clearly the range of autistic experiences, and the unique contribution of autistic people to families and broader society.
Whether or not her criticism of the program is fair is for others to decide. Attitude Australia has responded to the criticisms of the episode (http://attitudelive.com/blog/tanya-black/editorial-response-unlocking-autism). I do appreciate the work of attitude Australia, and value their documentaries. I would encourage people to watch this one, keeping Rosemary’s comments in the back of their mind as they do.
I was particularly challenged by one of Rosemary’s concluding comments to me:
@scliffo @Ausattitude I would disagree. Perhaps you need to listen to some ASD voices to understand why.
Fair call. I’ve now tried to do so. And I’m sorry that my comments added to your anxiety in watching the show.
rnorwoodozFebruary 2, 2015 at 11:14 pm
Hey Shane, thanks for the apology and the opportunity to further engage in conversation. I’m glad we could talk about the Autistic perspective on this episode (and Attitude TV gave us a great opportunity to air that – the conversation is worth reading if you’re a Twitter person, I think).
I really, really want to emphasise that I am not judging Rosalind’s love, I have learnt not to do that over the years as a teacher and as a parent. Every parenting journey is individual and until we walk in someone else’s shoes we can’t judge their personal feelings or choices (so, like, never). But what greatly concerns me is when any child is not seen as a whole person or valued for who they are, this very minute, and that was what I was reacting to, in this episode. Perhaps it was in production that this particular slant appeared, perhaps it really is how Rosalind feels. Without her response, or one from the producers, we won’t know for sure.
To be honest, I’m greatly concerned about the depiction of both families in the episode in question because I know that, as parents, we have all made rough decisions we regret behind closed doors. Would any of us want them shown on television? I doubt many would be prepared to make that choice. When documentaries are made about disabilities, even if the point of them is questionable, it is important that we depict everyone with dignity, parents included.
However, ultimately we have to ask how is the person with a disability depicted? In this case, two children who may struggle to understand the implications of appearing on TV more than most or who may have trouble communicating their consent or disagreement to such a depiction. I feel we need to be even more careful when consent (even of a minor) is difficult to ascertain. Especially when the depiction is so heavily weighted to the negative, as was in this episode
I will, however, again rejoice with you in the relationship between Annabelle and Claude. It’s a beautiful thing, something raw and genuine to see. I am overjoyed that they have each other in life. I am sure that we both share enjoyment of the tender moments shown in the episode.
Thank you again for this opportunity to discuss further, Twitter can be such a difficult way to trade perspectives.
All the best, Rosemary
jaymcneillFebruary 4, 2015 at 7:52 am
Wow… This is such a dialed in conversation. The subtlety and nuance has me afraid of making a comment – and I am a father of a special needs child.
Shane CliftonFebruary 4, 2015 at 9:38 am
Yep. I think I needed a bit of that for myself.
rnorwoodozFebruary 4, 2015 at 11:58 am
Please don’t be afraid to comment, it is important that we talk and discuss, hopefully without getting heated. When we discuss from a place of respect and listening then everyone gains something.
Shane CliftonFebruary 4, 2015 at 9:41 am
Jay, what I’m also learning is that each disability needs to be responded to very differently. Certainly, in my own situation, my body is a problem that I’d like fixed. My situation, though, is very different to autism, or deafness, or Down syndrome – and even within these disabilities, different individuals think differently about medical responses.
rnorwoodozFebruary 4, 2015 at 12:05 pm
So true and everyone is different and we can’t assume commonalities in labels of disability. Just last night I was discussing with a friend with Autism that he prefers ‘person with Autism’ and I prefer ‘Autistic person’ and neither of us particular loved either term, anyway. And then I have friends on the spectrum who completely reject the idea or need for being diagnosed or using any term. I haven’t met an Autistic person in years who wants to be cured, but I’m sure they’re out there.
Disability is a hard field to enter into conversation about as we are incredibly diverse, between and even amongst labels. Making assumptions before listening can be a dicey business, unless you’re prepared to retract at any moment. The worst you can do is insist a personal perspective is not valid. After that, it’s all just discussion and learning.